talk about spectrum

Hope said:

I definitely over analyse social interaction, particularly around eye contact. Some people have told me I make good eye contact, but I am not really looking at the eyes (a good trick!) but at the mouth. Maintained eye contact distracts me and it means I cannot focus on what is being said, so I either give eye contact in order to appear polite, without taking anything in, or avoid it and risk appearing rude!. I am caught between a rock and a hard place.

I can totally relate to that :-)

I think from an early age some autistic people might learn that not looking in the eye means you are lying, and they learn to make up for it by "pretending" to look. In my case I think I've learned to look at a person's face but I think I am not really aware of their facial gestures. Maybe just the most obvious ones, such as rolling eyes or smiling, but not all the other facial subtleties that an NT is supposed to capture without analysing.

I like the 'autism recovery day' thing. I said to my dad today, after he asked me if I am going out, that I was out all day yesterday and Sundays  are my designated recluse day, or reading day, when I don't face society at all.

I also told him that I need to recover!

NAS11521 said:

It's complicated, though, isn't it?  Most of us on autism/AS forums come across as 'loners' who find it difficult to socialize and prefer to stay at home but if we don't attempt to integrate with the NT world we're unlikely to form friendships or find partners. 

If you have a special skill or ability and are valued as a employee - or better still are able to form and run your own company - that's fine but some posters who have done this have come on to forums to say that after retirement they find themselves completely alone -and sometimes suicidal.

Sorry if this sounds negative but I can understand why parents want their children to 'conform' because they really do believe that this will give them a happy and easier life as adults.  However the danger of wanting to be 'positive' makes many teachers and other professionals ignore the stress and strains this will inevitably put on the child when it becomes an adult.

Good overview of the situation, tt is a catch 22,, i find that I allow myself NT days,, days were I have to sort out my worldy stuff, bills, phone calls, etc,, but I am exhausted the next day so I have to have an autism recovery day.

So I think that maybe to have an autism recovery routine is a good thing, my area is the garden, we no contact with the world, listening to the radio, a bath and making food on the stove.

If you look at most of the approaches to helping children and teenagers on the spectrum they are about getting them to conform, on the basis the more they conform the easier it will be for them as adults.

That may be valid thinking but doesn't take account of the psychological damage in the process. Most of these solutions reinforce negative feelings because they focus on the idea that the individual can change their ways to improve their lives (ie fit in like a 'normal' neurotypical).

Very few of these methods are accompanied by any strategy that recognises the possibilities arising from being on the spectrum and creates opportunities to explore that potential. Its all about denial of what they are like, and trying to make them change.

An obvious example is Social Stories. If people aren't making eye contact, and therefore have difficulty reading visual cues in faces, repeatedly going over and over pictorial story lines may help people anticipate social processes, but are more likely in the process to demoralise the individual and undermine self esteem.

The proponents of such solutions don't understand that if someone cannot do something, hammering at it robotically as if somehow the change will be forced, show extraordinarily blinkered and narrow training.

And the really serious outcome is that this PROGRAMMING stops, or is less omnipresent at Transition. By adulthood none of the real problems individuals face have been addressed, only loads of programming and brainwashing that has no scientific provenance. So they are not now equipped for the adult world, and have crushing low self confidence and low self esteem.

Sadly they might have had tougher lives growing up, but might have been better equipped without the BRAINWASHING.

Longman -  thinking about your question re forcing NT models on people who are on the spectrum.  Is the sole aim of this policy - to get us to look as if we fit in? Thereby ignoring what is inside us.

Surely that is denying the individual and their particular talents. Even perhaps saying, you are like us but you've somehow gone wrong and must be put right, at least on the surface.

It is quite a worrying concept.

My own concern about this is whether in fact the degree of childhood intervention is making adult life harder.

If I go back to the lecture I attended, the speaker's strong message to parents was to create an environment for confidence, self esteem and encouragement of special interests towards productive applications. He was saying parents have to disregard their hopes to correct and modify their children to fit into neurotypical society.

Given much of the talk hinted at current thinking, that is a terrifying indictment of the last twenty plus years of autism support for children and teenagers. The speaker was saying that people on the spectrum have a higher need to explore and learn, and need to be allowed to do that.

Therefore all this forcing to fit in with the NT world might actually be damaging. Asking people to do what they clearly cannot do, on the grounds in order to survive as adults they need to be NT competent, is demoralising and restricting. Trying to make children on the spectrum fit their parents' models for life may be fundamentally wrong.

He also referred to the number of technology breakthroughs achieved by people identified as being on the spectrum, and that nearly everything around us owes something to autism.

He didn't make connections I would have liked, but at another pioint he talked about role models. People on the spectrum are looking for people to emulate. They are being told to survive they have to emulate NTs, but is that actually correct?

Yet all those inventors, writers, composers and other great thinkers that people try to paint with an autism/asperger lifestyle in retrospect - we are now being told that achievers like that wouldn't have had real autism/aspergers; they'd have been much further down the spectrum.

But these could provide role models.

Is it sensible to force NT models on people on the spectrum and deny that things can be achieved by them, given the right supportive environment, by removing the potential role models?

True Colors - like yourself, I had to adapt to the NT world. I just got out there and did the education and the work. Having reached my fifties before diagnosis I appeared outwardly to have done everything NT quite well. Inside my head it was quite different, and my experience of the adult NT world was quite different to anyone I knew, with the exception of my sibling.

My adapting was in behavioural respects - not in the way I thought or the sensory and communication problems or the dyspraxia I had. Acting like an NT was done despite these problems.

Your comment that you have noticed some diagnosed children, once adult, being unable to cope in the NT world is significant.

I am assuming these children had help to adapt their outward behaviour after diagnosis, by being taught to behave in a way more akin to their NT peers. Your observation questions whether adapting the child's outward behaviour does have a lasting effect when, grown-up, it is finally exposed to the pressures of living in the adult world. 

I may have fared better, had diagnosis been around when I was a child. But adapting, to me, seems to be a life-long activity.  

I need to come back on the bullying issue. As I said there isn't anything on line.

If someone is socially isolated at school, the bullying, which is forced social interaction, may be one of few really deep social interaction experiences. Therefore this is likely to affect an individual's perception of relationships.

Although I'm responding to something said in passing in a lecture, it has set me thinking about this.

I had great difficulty in my twenties and thirties, and beyond even once I was wise to it, with people who try to lead you into a negative view of yourself. It is a game played in the workplace and in pubs and anywhere else people are together. There are some people who like to engage susceptible people in a conversation which turns everything on the downside, the negative, seeing the worst, and enjoy the feeling of power as their victim gets more and more wrapped up in their manipulations.

I've grown up with a bad tendancy to self negate and self deprecate. This isn't helpful - as the saying goes, "don't knock yourself down, there are plenty around to do it for you" or somesuch. It also means you present an image of someone lacking self esteem and self confidence. That persisted until my diagnosis gave me confidence, and I became better at avoiding it.

I venture to suggest that that's an example of bullying addiction.

longman - you make so many valid points.
The difference in trying to 'change' the behaviour and 'reactions' in diagnosed children, stands out in stark contrast to the treatment of those diagnosed as adults. There seems to be no acceptance that our brains operate differently, but instead a need to slot us into an existing niche, for treatment.  Perhaps they should be listening to us more closely instead of being quick to assign mental health 'labels'.

On the bullying - probably 'addiction' is not a good word to use, though I do see (hope) that it is used in the context of being addicted to 'expecting it' rather than in getting people to bully you. I personally have a wariness of social situations, not only because of the communication difficulties, but because of the danger of bullying - but I do not go into a social situation expecting to be bullied.

My experience is with bullying that is slow to develop - the bullies having contact  over a period of time, for example in the work place, and their realisation that you do things differently, do not join in the chit-chat/gossip/rumour or the social events so much, and operate in some areas in a much more efficient way than they can, whilst experiencing difficulties with things they can take for granted.  Is the alternative, not to expose oneself to these situations at all?   

I agree with your suspicion that clinicians see our difficulties as side effects that can be cured, and that counselling and pills are seen as the panacaea. I suppose they would argue that this is all they have to work with, but my thought is that they could work with listening and understanding instead of immediately reaching for the prescription pad.

Interesting what you report about the comments at the talk, on drug addicts. The assumption was always that severe anxiety in addicts would be a mental health problem. It is interesting (and good) that ASD is now being considered as a possible cause as well.

Thanks for those thoughts. I felt it was inappropriate to name the speaker, and felt the need to be cautious generally about representing a given talk in this field, as clinicians/NAS staff looking in probably know. NAS could probably best advise me whether I have handled this appropriately.

I agree with the Imp of the Pe...'s view of this. This was a talk to a parents group, so about the kids mostly, but it did address transition and adults. It is as well to remember that the health service and Government consult paediatric neurologists and other such professionals before they listen to us. So I felt it useful to air what I learned from the talk, because my guess is it was pretty close to current official thinking .... and policy.

Again NAS Moderators could confirm or tell me I'm talking rubbish.

I was bullied from primary through to secondary, mainly because sudden noise, complex movement and noise, especially in the periphery of my vision, ramped up my tension to melt down point (though meltdowns haven't happened much as an adult). So my peers quickly found I could be used as entertainment. They could stage manage a meltdown. I've seen it done to others. The normal "rules" as to what bullying involved didn't really apply (and two years ago I asked several anti-bullying charities what they knew about autism as a factor in school bullying and none of them knew anything about it - I doubt that's changed).

The point about addiction to being bullied is a real issue, not only because I know others who have been so affected and but even myself. As I say I couldn't find anything about it on the web, and maybe NAS Moderators could look at this one for me, but I'm pretty sure the speaker was right about this, though its only him saying it that has got me thinking..  I'm not talking about actually wanting still to be bullied but letting yourself into situations where it still applies. And that may be an issue in the workplace.

The other thing is the cure. Yes it is financially and politically desirable to believe ASD can be cured. But the difference between boosted confidence and opportunity to grow reducing stress, and actually resolving things like environmental overload, eye contact, social interaction difficulties, coordination and motor skills, is one of fundamental thinking.

But the fact is, I suspect, that clinicians and neurologists don't deal in these parameters, they see them as side effects rather than causes. For them our condition is curable with counselling therapy and pills, and somehow we are then supposed to get over the rest.

The point is that still drives Government and Health services policy.

One thing more I remember from the talk which struck me. I knew that a lot of alcoholics had some form of autism, I didn't know, as the speaker asserted, that this was true of a lot of drug addicts.

It might be important for the views being discussed here to remember that the talk was given by a paediatric neurologist. His comments on bullying might have been a bit loose but he may have been referring to this from a developing neurological point of view. If one's experience of socialising frequently involves bullying then perhaps every anticipation of a social situation triggers a neural response that is to a smaller degree an experience of bullying. If one then fails to gain any objectivity on one's situation, the continuing neural response becomes the default position of the brain as the mind interacts socially. So a need for some social interaction might develop into an acceptance of being bullied and a lack of bullying might be felt as a form of social rejection.

Or I could be talking utter rubbish!

As for recovering from autism...however which way you understand this, I would suggest most people do not really recover from it at all. The possibility of coping successfuly with it, enought to function in NTLand, is only a possibility and logically speaking could actually not apply to anyone at all. I would imagine that any form of 'recovery' or simple coping is crucially dependent on the attitude of those who are most in contact with the person with autism and any change in attitude might be very, very distressing.

Just some thoughts.

Do you have any details of who was giving this talk, longman?

Because, quite frankly, I believe they're talking a complete and utter load of rubbish.

Hello longman- I couldn't believe what I was reading there.  They really said that people get addicted to bullying and want it to continue? I have to say that I was bullied for twelve years - right through school  - and not a day passed when I did not want it to stop. It was nightmare and I would gladly have stepped out of it if I could have done.

Was someone confusing bullying with abuse and co-dependency?
  -  Where the female (usually) is bullied/abused and then the perpetrator says "Sorry, sorry, sorry, I will never do it again. Will you forgive me." Then is nice to the victim who forgives him. Of course the perpetrator does it again, but often in the victim's mind the niceness afterwards outweighs the horror of the abuse and she stays with him.

The idea that one recovers from ASD is I think more linked to those budget and medical stats... I would imagine that a person will have periods of coping better and the outward signs of the ASD might subside.  But you've still got the same problem inside, and it will become more noticable outwardly when conditions put more pressure on you. You still have those core problems - not cured, but like a saucepan on a 'gentle simmer' instead of a full boil.

There is a danger that regarding an ASD as cured by the time you are adult, will cause a lot of adults to be turned away from being assessed and told "You can't have an ASD because adults don't get them."

Personally, I don't agree with people not being given a diagnosis if they appear to be coping - after all they'll still have the condition won't they?  

Several people on this thread have mentioned bullying. One of the things the talk included, briefly, in passing, was that people who are bullied a lot get addicted to being bullied. I tried looking this up on the web but found nothing to support it. The implication, not fleshed out, was that people who are bullied a lot develop a need for it to continue. Something worth exploration.

Another thing the speaker mentioned briefly was that you can recover from autism, and that lots of people do, if they get sufficient self confidence and find avenues to follow as a career that use their skills. That is in some way true of myself.

But I also question this as my eye contact issues, social skills, and some environmental problems persist. So I'd love to see the scientific evidence for his assertion.

I would have liked to ask, but the speaker did not stay long for questions, about the effect such assertions have on adults on the spectrum. It is all very well to say that people can be cured, but the system is all for getting people off the books, and you can have your diagnosis retracted.

Thing is, as we all know, getting a diagnosis is long and hard, with many pitfalls. So if you get un-diagnosed, then need help again in the future, I guess you are more or less back to square one.

Hardly inspirational for people to strive to recover!

But then its really all about money isn't it. And medical statistics....

I am with you there susie163. I also was a late diagnosis and went through a raft of other suggestions from the Doctors that revolved around mental health. I have been adament all along that I did not have a mental health problem and after much reading and observing myself, I realised that there was a strong possibility I had Asperger  - which was eventually diagnosed. It is frustrating when you have known for years that there is something different about you, but now I know what I am dealing with, I can work on strategies to cope.  

Picking-up longman's points about early diagnosis. Looking back at my own childhood I think an early diagnosis would have been good - I remember a lot of confusion, constant bullying and isolation when I was at school. Also no understanding at all of the pressure and anxiety I felt amongst groups of other children and in strange situations. But I think to try to get children to be like their parents is wrong. Surely this is as longman describes, a restriction. I would say look at the individual child and help develop their intelligence, talent and skills in the areas they are interested in, which in turn will boost self-esteem and at least show them they have a place in the world. I think that would have worked for me.

This may be a bit muddled....

i agree that a whole lot of harm can be done by trying to force children - or adults - to fit in with an NT's idea of "sucess".Self confidence and self esteem need to be promoted cos nobody, autistic or not, can thrive without them. Like Hope I have mixed feelings about my late diagnosis - i am cross because I had to fight so long for recognition of something that to me was so obvious, even crosser that the "professionals" continue to try to treat me for mental illness - yes I get depressed, i get anxious, I get a little crazy sometimes but who doesn't eh? Way I look at it, any human who lives in a situation that causes unhappiness/stress/disallusionment/isolation etc. will show some signs of mental "illness" eventually. Noone, nobody,can or should be forced to be something that they quite simply are not. x

accept the feeling of confusion aka emotion there will no conflict, I am finding if I create a deliberate pause in interaction, it slows down my mind, lowers emotions and lessens confusion, by knowing the feeling of confusion within...

So social intractions becomes less stressful and you can pause in this confusion within this creates a relaxing gap(of confusion, paradox). Basically the drowning aspie gets to take a breath of air in the confusion, instead of USING A COGNITIVE MINDSET to analysis an emotion confusion via mind. The heart has to accept the confusion within, instead of trying to externally relate cognitively to emotion, the mind can not resolve this so creates more confusion within(emotion) which makes an anxiety loop long-term and HIGH IQ... but the high IQ is just this cycle looking to rationalise out this confusion,, which is impossible, as emotion is confusion, confusion is emotion. LIFE IS CONFUSION for everyone, accept it.

I was diagnosed late and part of me thinks that, had I been diagnosed as a child, I might have become defined by my condition, whereas the other half is very resentful that I was not diagnosed as a child because, if I had been, I might have far fewer OCDs and anxieties now.

I definitely over analyse social interaction, particularly around eye contact. Some people have told me I make good eye contact, but I am not really looking at the eyes (a good trick!) but at the mouth. Maintained eye contact distracts me and it means I cannot focus on what is being said, so I either give eye contact in order to appear polite, without taking anything in, or avoid it and risk appearing rude!. I am caught between a rock and a hard place.